Growing Up with Brain Injury

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You can never predict when the epiphanies, the realizations, those a-ha moments are going to hit you.

I was in a bar. 2010, somewhere in New York City, and my friends and I were celebrating someone’s birthday or someone’s best friend being in town for the weekend — details I don’t remember. I do remember the Amazonian woman wearing what looked like an ’80s bridesmaid dress and the kind of plastic heels that come in a men’s size twelve. She was insistent upon predicting the futures of bar patrons.

“You … m’dear, are birthing a creative project,” she said, cradling my right palm. “Oh, it’s a life’s work. It will help others. I see you meant to be a healer. I see you a teacher…. Yessss … a teacher!”

She stretched the skin on my palm.

“Oooh, and honey child, you get your life together and a man’s a-comin’.”

Her hands were rough and she smelled like cheap sunscreen, plastic, and coconut. I thought about my book, about the chapter outline that I had just sent to my editor friend. I thought about the yoga teacher training program that I had just written a fat check for. I smiled and handed her a crumpled $5 bill, and she followed me over to my friends. We huddled around her as she pulled uncanny predictions from our palms. And then someone ordered a round of drinks and someone else dragged me to jukebox. Eventually, we forgot about the drag queen psychic.

A few hours later she came back, asking for my left hand.

“Oh my…” She was shaking her head. “I should never do people’s pasts.”

“It’s okay.” I wondered if you could see brain injury in someone’s palm reading. “Just tell me.”

Divorced parents, neglect, broken family, rejection, isolation. Her interpretation of my past spewed from her glittery lips in ugly words and phrases that I didn’t relate to. You were abandoned, abused. “No, I was not abused as a kid.”Yes, abused. Definitely emotionally, psychologically abused. Yes, you were. And your parents are separated. I shrugged. It’s your dad. Yes, your father. He… “Oh.”

“It is time you admit these things.” She was squeezing my hand, leaning in close, overpowering me with glitter and the scent of suntan lotion. I pulled away to fish around in my purse for money. “Honey child, just admit these things and then you can move on.”

I thanked her, handed her $10, and willed myself not cry in the East Village bar as I sought out my friends. Three hours later, I was sitting in the dark at my kitchen table, feverishly Googling phrase after phrase: kids of divorced families; symptoms of emotional abuse; symptoms of psychological abuse; broken families; single parent families. I was taking notes. I was sobbing. Sad tears. Happy tears. I was realizing things.

It was my a-ha moment. I finally began to understand fifteen years of terrible feelings and why it was okay to have them. I understood why I was writing my book — the story of growing up with my dad’s brain injury — and why other kids (young and grown) needed it.

We — the kids of brain-injured parents — suffer in ways very similar to children who come from divorced families, children who have been emotionally or psychologically abused, children who have dealt with loss, children who have been neglected. We watch family dynamics flip and roles change, or dissolve. We feel paralyzing confusion. We feel guilt and remorse. We feel the need to fix things we can’t fix.

But it’s brain injury. It’s not divorce or death or abuse. Brain injury is no one’s fault and even when you try to tack blame on a place or a person, it doesn’t work. It’s misplaced. You — the kid — must be strong.

You did not lose the love of your life, your childhood best buddy, or your partner until death do you part. But you did lose your mom or your dad. And yet you didn’t really lose them, because they are not dead. They are something else that no one can really explain to you. Not even your friends who have been through death or divorce.

Mom or Dad is … different.

Yet, in the wake of it all, after one parent changes so does the other, and thennothing pans out the way you had planned, and it’s all out of your control. At some point you realize you have a choice: roll with it and grow up into someone you didn’t know you’d be or isolate yourself and get the heck outta Dodge as soon as you can. Either way, life is not going to be the same again. You — the kid — are not going to be the same.

I chose to roll with it.

I was fourteen when it happened on a rain-slicked highway. He was a passenger in a car that slid into a pile of other cars, and he hit his head (too hard). It was July, a random Tuesday, and he was supposed to come home and take my friends and me waterskiing. A Tuesday a few days after our father-daughter trip to New York City. A Tuesday full of typical teenage woes — bad skin, dumb boys, tedious to-do lists, Western PA rain.

One moment I was changing into my favorite white swimsuit. The next, I was sitting in a waiting room at Allegheny General Hospital in Pittsburgh, surrounded by my family and family friends, all crying and planning and reassuring each other. I had my purse and notebook to keep me busy. I watched the news. I watched a pair of parents discuss plans about their son who had just been a motorcycle accident. I watched a woman try to speak Spanish to a nurse who could only speak English, something about a “ladder” a “husband” and a “fall.” I watched doors, hoping that my mother would come back through them. I watched for someone I knew to smile.

It was July 30, 1996, the beginning of “the after” that would forever follow “the before.” We all know the path — the hospital, the waiting, wishing, planning, pleading. The weeks of coma-silence (for some, for us). The hopeful explanation of recovery, the plans for rehab and for readjustment. Pills and paperwork. Searching for the new normal in a sea of inconceivable changes.

The second day at the hospital, a nurse handed me a book to help explain the inconceivable changes that were coming: When a Parent Has a Brain Injury: Sons and Daughters Speak Out.

The book, written in 1993, paraphrases it well.

The crisis of injury forced sons and daughters to grow up quickly. They became independent and self-reliant at an early age. Caring for younger siblings, preparing meals, doing laundry, and going to school often were seen as reassuring signs of coping by relatives. Yet sons and daughters recall that even while they “did the things that needed to be done,” they felt confused, alone, angry, and sad. “A repeated comment by sons and daughters was that “nobody really understood what I was going through. Once my mother (or father) came home from the hospital, everyone assumed everything was all right. Life was not ever the same again.”

Fifteen years later and I’ve suffered and survived my strange loss of innocence. I’ve come to learn how to find acceptance and love in times of adversity, in times of brain injury. In the right company, I wear it like a three-part badge: fourteen years old … severe frontal lobe … my dad.

Fifteen years later and I’d started to write the book, share my story … my version of brain injury. Fifteen years and I’d remained strong, remained a good kid. Fifteen years of giving the utmost love to my parents — my mother the caretaker, my father the survivor. Fifteen years of missing them both, of wondering why it was always so tough, wondering whether I was handling it all the right way. Fifteen years of never giving myself a break.

One chance meeting with a drag queen psychic in a bar and I was able to understand fifteen years of feelings.

It is always so difficult to know what to do when you are young I have an uncle who was never the same person but I knew I still loved him but didn't know how as a child. It was scary, confussing and a let down that he changed, which ment others had to change. I am looking forward to reading your book and pray that it gives you some direction as to where do you go from here...

Thank you so much! My mother's accident was 25 years ago. I was five years old. You spoke the same feelings I've had for so many years. "The before", "the after", how everyone assumed everything was alright, and growing up fast. It is only now that I am realizing that I'm not alone. We need to help the forgotten children of brain injured parents.

Thank you for giving me a deeper look into how my daughter must have felt all these 18 years since her dad suffered a brain injury. She has been so supportive, but I know she must have felt hurt in ways I might not have understood. I'm hoping we can both read your book and work on any hurts that remain.

Thank you all so much for your kind words and comments. It is inspiring (all things considered) to know I am not the only one out there. For years and years, I felt I was. Much love to all of you!! And--I\'m excited that you\'re all excited for my book :) You can get the latest and greatest updates here: https://www.facebook.com/HeNeverLikedCake?ref=hl

This is amazing and enlightening. My husband suffered a brain injury when my twin daughters were 14, same age as you. I am sure you would all be kindred spirits. Your work will help many children cope and feel understood. I cannot wait to read/share you book!

I am a TBI survivor of 5 children...it will be 6 years ago May 7, 2007. My oldest was going into 6th grade and my youngest just 4 years old. In the past I have tried to talk them about it, especially my oldest 3 but not sure if they know how to share what they have been feeling. I recently had a great breakthrough of healing (just few weeks ago) and I wonder what they are thinking now. They have been gracious, understanding,etc. but after reading this article, I wonder if I anyone...even myself...has ever tried to come at from their perspective. ON this day, I will begin to tread those waters...carefully and respectfully. Thank you so much...

Thank you, you have brought tears and yet, you have made me more passionate.. I am a man who had a traumatic brain injury 6 years ago. I able able to do this-I can still resume most of my activities. My children and my wife are the strong ones. We need more forums like this one.

Hello all. Just wanted to let you know that you can purchase my book, He Never Liked Cake, through Amazon, B&N.co--or an ebook here: http://goindiebooks.com/435450/. The official launch date is March, 20th, but I wanted to share with you folks a little early :) Thank you for all your kind comments!

I had a baseball-sized brain tumor removed on 7/25/96....our 20 yr. old daughter was 3 back then. She plans to go into music therapy. I will pass this article on to her and those in the brain injury support group which my husband and I have established. The injury is to everyone in one way or another, and it takes a long time to heal! We are still learning how to function together (along with our 12 yr. old son born 4 years after the brain surgery)....and years from now, we will continue to deal with the impact which brain injury has on both the children and spouse of the injured. Thanks for sharing!

Thank you so much for sharing this. I know it will "hit home" with so many people who had to grow up in this situation. It would be nice if you started a support group on Facebook for children of parents with TBI's. Again, thank you.

I am so happy to hear you have written an book about this subject. My dad's car accident was in 1993, I was 23 years old. It was frontal lobe injury. He used to be an academic who never liked football. He is now a football fan and is impossible to relate to. It's all so sad to know that I could not fix it. But tonight, by reading your words, I realise that I too have been denying my feelings, grinning and bearing it and carrying on regardless. Dad, as I knew him, is no longer with us. The man who has been left behind needs care. I will look for your book.

It's kind of backwards to say that I'm happy that so many people are relating (so many kids like us!), but I think we all know what I mean. Thank you so much for reading and sharing. You can buy the book on amazon now (amazon.com, search: He Never Liked Cake. Yes, I'm going to start a support group, because I see there is yet to be one. If you are interested, friend me on facebook (Janna Leyde) and let me know and I'll invite you to the group. I think that's a great idea! Also, stay tuned as there will be another BrainLine article on this subject. Much love to you all, kids, parents, friends, caretakers and survivors alike. none of this is what one would call easy.

I was 8 when my mother suffered a tbi from a minor car accident. Those years were lonely, anxiety ridden times and I am still dealing with the effects probably more than my mom knows. I can identify with this piece so well. So much hurt, anger, resentment and confusion to this day but no one to "blame." PS facebook group link does not work and just redirected me to my home page. I was interested in checking it out. anyone have the correct link?

I'm glad to have found your blog!. I'm 52, married to an incredible woman, parent of two teens. My brain injury stemmed from several concussions and decades of headers playing soccer, topped off with an undiagnosed traumatic brain injury in a bicycle crash 20 years ago where near as I could estimate I was unconscious for somewhere approaching half an hour. Back then I thought it was no big deal, went back to work Monday, probably played soccer that weekend. But somewhere along the line my mental transmission started slipping. I lost several jobs, but like Sisyphus kept going back to try the same thing again. Meanwhile I met and married my wife, who put up with me for several years before she made it clear we were at a fork in the road, and to continue together I had to find out what was wrong with me. Finally a wise psychiatrist urged me to get an MRI, which showed I had massive hydrocephalus ("water on the brain") and faced an early stroke unless I had brain surgery to have a shunt installed and relieve the pressure. But even with the shunt, recovery has been a long, slow slog. I feel like my kids got shafted by my brain injury, and look forward to reading more of your blog and your book to gain some perspective and hopefully some motivation to get back into yoga, write more and be a more involved parent. I've been "meaning to" launch a blog about life with TBI for a couple years now, even have an empty blog waiting for me called Just rolling with it. By finding your blog I found out why why I couldn't use my second choice blog name! (My last name is Roll).

My mother was in a terrible car accident when I was in middle school. I remember the mother I had before and the one after as two entirely different people. No one explained the changes to me, they just told me to be patient with her and "give her time". Its been ten years now and the before and after mothers seem to grow further and further apart. I pity my younger siblings, neither of them can really remember the way our family used to be, but in a way I guess they are spared the pain of knowing how things should have been. After the accident my father used my mother's condition and possible windfall from the not yet reached settlement to build a house at the height of the housing bubble. The bubble popped before final inspection and we were stuck with two houses we could not afford. The driver my mother's lawyers were suing fled the country and his company washed their hands of the affair. There was no windfall. Arguments became the norm in my house. My father became increasingly paranoid and abusive. He never beat us, but we were in constant terror of his mood swings. I would stay up nearly every night, clutching my sword and a phone with 9-1-1 already dialed, waiting for the fight to get out of control. This lasted nearly four years before I convinced her to leave. I realize now that my relationship with my mother was not normal. She was in many ways more my child than I, hers. She was no longer able to fully care for my siblings or me or sympathize with us. Many of the same patterns of emotional and psychological abuse were repeated by her in our new home. I still live with her, paralyzed. I know she needs me in her twisted way and leaving may devastate an already deeply depressed mind, but I also know that I can never be happy so long as I am living in her house. She won't let me be happy.

My son had a brain injury 7 years ago. It has been hell. My daughter was in 3rd grade, and now is 16. She suffers from anxiety and depression. After reading this article, I now understand her issues and why she has them (we all have them). She not only lost her brother, but part of her mom and dad too because we were so emotionally involved with my son. :((

My mom has brain injury, and has since i was 8, she ODed right before a trip to a zoo in the next state up, i was sent inside to wake her up and couldn't figure out why she wouldn't. This was 6 years after my dad had passed away and i was already pretty much taking care of my younger brother and myself. This is the closes thing i've read that explains my feelings.

Indeed this is very well written. My niece had a very severe TBI during a running accident (she fell off a bridge and hit concrete). All of our focus has been on her for 20 months, and I recently realized her brother not only lost his sister, but also his parents that day because life revolves around the 24/7 care she needs. We are all in grief, suffering the loss of the person she was, and that she will never be. It's important for us to acknowledge the impact on the families. We need more TBI awareness and support groups because tons of people suffer in silence. It's up to us to spread the word. CRISTINAstrong

My stepdad has a Tbi from the war. It's hard because he's the only one I have known as "dad". The brain injury causes him to have mood swings and to lash out in rage. He gets bad head aches where he falls down to the floor at home, in the grocery store, anywhere in public and the pain is so bad he gets sick. Also his memory is really bad. My brother, mom and I have seen that over the years it has been getting worse. It scares me everyday that I will lose him. The emotions I feel really suck, I'm only 16. The V.A. barely takes care of him, so I do believe we should have more Tbi awareness and programs for families. No one has showed or explained to me how to handle this, we have been suffering with this on our own.

Oh my gosh, I am 25 and just now finding this! My mother suffered a severe traumatic brain injury when I was 8 months old. I don't remember the before but everyone else in my family does and tell me about the "before". To me it is just the way it is. I'm extremely close to my grandmother and I see her more as my mother than my actual mom. Yes, I do love my mom but in many ways she is more like a disabled older sister than my "mom". It is extremely hard to explain.

Thank you so much for posting this. Currently I'm 16 but when I was three my father contracted encephalitis which lead to tissue death on three parts of his brain. He was stationed at Guantánamo Bay base in Cuba and he thought that he had a fever but turned out to be an encephalitis and when they were bringing him home they brought him in and on pressurized cabin that made his brain swell and he seized and flat-lined. One of my first memories from my childhood was running through the halls of Walter Reed Hospital in Washington DC and my mom crying when she was talking to the doctor. Growing up I have always felt like I needed to fix things and help my mother with everything. She tried to navigate bring up three kids and having to go from being a stay-at-home mom to going back to college to become a teacher. When she start dating again my friends would ask me if she was cheating on my dad or they were divorced and I had no clue what to say. I had to watch my dad go from home to home because he couldn't live with us due to the severity of his brain injury.

This article comforted me and made me see that I'm not the only one that had to navigate through a traumatic, weird, unpredictable, scenario as a child of a brain injured parent.

This program is made possible in part by a grant from the Bob Woodruff Foundation, which is dedicated to ensuring that impacted post-9/11 veterans, service members, and their families are thriving long after they return home.